Don’t Read This Post

Don’t read this post if you prefer only happy thoughts today. There are plenty of other posts better suited for that on this blog and others.

This post is sad.

This post is heartbreaking and uncomfortable.

This post relays some of the realities of burying a child. It hurt to write and will likely be hard to read.

Once you read this post you will know – and you can’t unknow what you know.

If you want to stick your head in the sand and pretend that we are doing enough to cure childhood cancer, this isn’t the post for you.

You’ve been aggressively and sufficiently warned. You might want to stop reading now. I won’t think any less of you, I promise. I admit that I turned my head away up until a few years ago – but now I know and I will forever know.

* * * * * * * * * *

Two things happened on a Tuesday last month – one planned and one a surprise.

We had a piece of unfortunate business to attend to. Many of you have been through the death of a loved one and were responsible for the pragmatics of laying them to rest. This was our first time. We had been putting it off, but if we want a grave marker for Kylie, it had to be designed.

So on that Tuesday, we went to the funeral home where Kylie was buried. Nothing about being there was easy. Even though it is owned by dear friends and I’ve been there for countless funerals, it screams of the day we buried Kylie. I remember planning the service, the line of people at visitation, saying goodbye to her, holding my crying girls, and the sinking feeling of permanence. Worst of all was the shock of sitting in the back of a car when the casket came out carried by my seven nephews. I don’t know why that moment was so poignant. Maybe it was the sheer surprise of the door opening or because I wasn’t doing anything. I had no role at all. Like during her treatment, I was relegated to being a spectator. Whatever it was, those young men emerging with that box will forever be etched in my mind.

On this Tuesday, we sat around a table and talked. Earlier I had asked Robin to think about what she wanted on the marker. She had never mentioned it and didn’t show up with notes. But when asked, she rattled off what she wanted and it was perfect:

Soon after we finished that piece of business came the surprise. It came in the form of eight copies in a manila envelope. Eight copies. Eight copies that reaffirm what I know every day. Eight copies that make me feel helpless, weak, and insufficient. Eight copies that bring me to tears as I read entries such as MARRIED: NEVER…

Never means never.

I hadn’t thought about getting these documents. I suppose I need them. I’m not sure what for – she didn’t have a trust fund to dispense or a will to execute. She was just Kylie, 12 year-old Kylie, and now she is gone. I feel her gone-ness every minute of every day.

* * * * * * * * * *

This is how it is when you lose a child. The thing we had to do was difficult, but sometimes easy things like accepting an envelope devolve into an emotional crisis and break you into a puddle of tears.

We had driven separately and I cried the entire way home. I think seeing the death certificate brought back feelings of failure as a father… that I didn’t do enough to protect her. It felt so real and concrete, carved in stone.

I managed to keep the envelope away from Robin’s sight and stowed it into the safe with our other family records. Birth certificates, passports, insurance policies, marriage licenses, and now our first death certificate. Oddly, according to the state of Georgia she died of respiratory failure, not the insatiable beast of cancer. Maybe that is how the government rationalizes the fact that since 1980, only three new drugs have been approved specifically for use in the treatment of childhood cancer.

Wait! What? Did you hear that?

While hundreds of drugs have been approved for adults in the same time span, children are dying and getting next to nothing. In this age of genetic discovery, children are receiving a pittance… table scraps.

And so, Kylie is gone. I have eight copies of her death certificate to prove it and unless we step up and do something, other parents will get the same envelope.

I feel about as helpless to affect government spending as I did watching her body capitulate to cancer.

But you read this. And now you know. You may choose to ignore, but you can’t unknow. Maybe that’s a step. And if you tell someone, then they will know too.

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82 thoughts on “Don’t Read This Post”

While not for a child I recall getting the death certificates for my parents and it just yanked my head out of the sand, slapped me upside the head and then threw me back in the sand. Hugs and hugs for you, my friend.

I know these feelings all too well. When our son died 2 years ago, it didn’t take long to receive the death certificate copies. I stashed the unused ones in a place I wouldn’t accidentally stumble across them. It is so hard to look at them. And the marker was so difficult to order. It was finally placed a couple of months ago. Beloved son, brother, and friend, it says. And so he remains. God bless you and comfort you in your terrible loss.

I never knew, until Kylie…how little research is set aside for childhood cancer. As a Mom, as a human- I will join you in your fight and do whatever I can to spread the word. I’m so sorry for your loss and for your suffering, but just know you’re reaching people that before were unreached. It’s working.

The Meyers are one of the strongest family units I have known of. Yes this is gut wrenching and hurts beyond words. But you have done more in raising awareness about childhood cancer than any other family I have known or heard of. Kylie was your blessing, your family may be someone else’s blessing by being able to bring about the changes needed. I hope so. I vow to do my share. Thank you.

Thank you for sharing your feelings so fully Kylie’s Dad. I know your name is Mark, but I know you are especially Kylie’s Dad. Just as I am ‘Tamzin’s Mum’ and I understand completely absolutely and always will. Love to you and all your very loving family.

“You can’t unknow what you know”
I am so glad you wrote this post. I am so glad I read this post.
All the questions, the anger, the sadness, the pain. And yet …
The life force!
The sheer energy – the living still – the changing still.
“Loved with abandon
Radiated joy
Changed us all”
Thank you
All of you – thank you all.
((hugs))

~I’m an ER Nurse and never had any idea so little is offered by our Government for our Children! I’m sharing your story with anyone that will listen, If there’s a petition I’ll sign it, if there is a letter to he writen I’ll write it! This has to change. Thank you for sharing Kylie with us. I know she has made a difference in my life!

I remember getting my mother’s death certificate and getting angry at the cause of death. It listed something like multiple organ failure instead of pancreatic cancer. I was so upset thinking that there had been no advances made in the detection and treatment of this disease and she wouldn’t be counted among its victims. Maybe that was why, I thought. Faults in the statistic gathering of the data. I got her certificate changed to read pancreatic cancer as the cause of death. She may have been just one in many to the world or to the agencies that collect such data, but to me she was the WORLD. God bless you in your journey.

You are such a good writer- I love reading your posts and you always seem to express my exact feelings at the loss of my son on 2/3/15. His death certificate also lists respiratory failure and not the Ewing’s that took over his 15 year old body. I wonder if the fact that cancer is not listed as cause of death for many children has any affect on the funding it receives?

Poignant, heartbreaking, maddening, unfair, disgusted are some words that come to mind after reading your “Don’t read this post”.
How can this clearly wrong dispersion of funding for childhood cancer research and drugs be changed?
So sorry for your (and your families) heartbreaking loss of Kylie, Mark.

Thank you for sharing so I can’t unknow what I know. Your vulnerability and transparency is a gift to all of us… although the pain is palpable, we are blessed by you. Love to you and yours… from me and mine.

I read it and cried but I cry everyday since I too watched cancer destroy my precious son and then to receive a death certificate that stated he died from congestive heart failure instead of cancer. I have followed and watched too many children die, been to funerals for children. It is heartbreaking and they deserve more.

Everything about Kylie’s death is all wrong. The unsuccessful battle of the worst possible fight. The sequencing: parents should not have to bury their children. Her tender age. The constant reminders. All I can say is gradually, God will ease your pain. It is His gift to us that we don’t live in abject misery for the rest of our lives. The pain calms and we learn to live with it, somehow. I personally know. Years ago, my family buried my baby sister when she was 3. Though I could not see any light at all, for a long time, we did learn again to laugh, dance, and sing, with joy. So have hope. Hope is what sustains us. I am deeply grieving your pain.

“I think seeing the death certificate brought back feelings of failure as a father… that I didn’t do enough to protect her.”
–Mark, I’m moved. With tears in my eyes I just want to tell you that you are a courageous man and wonderful father, and your family is a courageous, strong and beautiful family. I know we don’t know each other really, and I don’t have much right at all to say anything, but please accept this encouragement as something true from my heart.
And I believe that Kylie was truly loved with abandoned radiant joy.
Bless you.

I am sorry for your loss. I work for a startup pharmaceutical company. The requirements of FDA to claim safety and efficacy in children are very difficult to meet. Many companies only go for claims in adults for that reason.
I am not familiar with oncology drug pathways to approval specifically. This is what I know generally.
It is not that there isn’t a desire to develop drugs for children, it’s that the path to market in adults is faster and better defined. And a promising drug will be used off label for children.
The question becomes, how do we jump over this regulatory hurdle without risking safety and efficacy proof? I don’t have that answer.

Exactly! there are some organizations pushing legislation right now to change that. I can’t recall the name of the bill and I’ll leave that to people smarter than me. But that’s the kind of hurdle that needs to be eliminated.

Your family and another family who lost a child to a form of sarcoma have really been on my mind this last week. I don’t know why – I just felt the need to be praying for y’all. I woke up at 3 a.m. and couldn’t get to sleep the other night, so just began praying. That’s maybe weird when I don’t know you at all – other than from following your blog and Smiley for Kylie. I can’t pretend to know the pain and suffering that you’ve witnessed and gone through – I just know that Kylie made an impact on me. Actually if I’m honest – your whole family has. From the moment the Basso family shared a video on the 1 Million 4 Anna page – I couldn’t stop praying to God, and continuing to share about the need for more research into childhood cancers. I live in the UK, but I know there isn’t a lot of money going into childhood cancer research here either compared to adult cancers. There’s just got to be better treatments to be discovered…and shared around the world.
Your wife’s words for Kylie’s marker sound perfect, and from everything I’ve read here when you’ve shared your heart, I’m glad your daughters have parents that love them so much and so well.

Thank you for telling us about the end of your family’s very difficult journey with the beginning of a new & almost unbearable journey. I am not sorry to read this & had not heard of Smiley for Kylie until now. Sounds like you were an awesome daddy to Kylie & praying The Lord will ease your family’s pain as time goes on. Kylie was a brave little girl who left us way too soon. Will be praying for more cancer drugs to be developed for children as they are our future & deserve the drugs as much or more than adults. God bless you all & may Kylie have found peace & live forever in your hearts. Much love, prayers & sympathy from Arkansas. Keep HOPE alive always for our Father does not fail us. Hugs to you & yours. Love with abandon! That would make your Kylie very happy. Praying for pharmacies to overcome their hurdles & focus on our cancer sick children & drugs that will help them beat their cancer illness to become healthy again. It is the right thing to do. Hugs & shared to spread the word!

I’m very sorry for your loss of precious Kylie first of all.
Second, I’ve always felt like I never knew my true calling or why I was put on this earth. It both pains me and comforts me to think that since my own daughter’s diagnosis, I feel that it is to spread awareness and hopefully push to find a cure for this awful disease and how little is devoted to our most precious gifts.

Unfortunately, in my small corner of the world there are way too many children here affected by cancer- and too many families affected by the passing of their child despite aggressive treatments. There are no words that I can give to comfort them. No words to lessen their pain. All I can do is offer a hug and add my tears to theirs. I pray for strength, wisdom and humility not only for myself in having to deal with these sad situations but for those caring for these brave children. I pray for peace, strength, and understanding for the families that have suffered a loss. We cannot wait for more available treatments for children any longer, we need more options now. May you and those who have lost a child find peace and love so you can heal.

Oh, the tears. As the Mama of a little girl fighting brain cancer, now for a second time (and recently having pretty not good scan results) my heart just shatters reading this. It hurts with and for you, but also at the reality staring us in the face. (NO, I haven’t given up hope, not will I ever, but this so very much hits home.)

it was the perfect thing to say for such an incredibly imperfect and profoundly sad last statement. to have been loved with abandon is the ultimate and that is why it is so incredibly hard for all of you who loved and continue to love her this way. my heart goes out to all of you – beth

I haven’t been following your blog — stumbled upon it via a Facebook share. Yet I was so touched by your words on receiving those papers… just this week, I received a letter addressed to my late daughter, from the secretary of state of Illinois, congratulating her on turning 21. It just about killed me. Cancer took her at age 18; she didn’t graduate high school, or make it to 21 with her classmates. Most days, I’m okay, remembering her spark and spunk fondly… but receiving those papers caused tears that wouldn’t stop. It’s unfair and it sucks and it makes no sense for either of us but we go on and keep their memories alive. Your daughter’s gravestone is beautiful and does justice to her beautiful soul.

I am so sorry for your loss! I feel words are not enough and I am not good at knowing what to say, but I did want to give you a link. My former pastor’s grand daughter is 19 and she is fighting stage 4 bone cancer. She made it through a year of college despite the fact that the doctors have reached the end of what they know to do for her. They have told her to live her life-do what she wants to do now. She was 18 when she was diagnosed with cancer that usually is only found in younger children. Anyway, the reason I am writing you is that she has started a foundation and has raised a significant amount of money and is raising more for research for pediatric cancer research. Her name is Kayla Perry and she lives in Alabama. Her organization is called Open Hands Overflowing Hearts. Cindyhttps://www.facebook.com/OHOHKayla

It is so important that you tell so people can’t unknow. It is so important for people to realize kids are not a statistic and that the amount of money given to Pediatric Oncology research is horrible. Virginia recently got Childhood Cancer Awareness license plates as the result of the hard work a boy in treatment for Cancer did to get enough signatures to get the bill passed. He died before the plates came but he saw the signed bill called The Mathias Bill. I proudly have them on my Car.
Thank you for writing this Post, for continuing to make sure people can’t unknow. CHILDHOOD CANCER EXISTS, it takes live of children and leaves parents with holes in their hearts, that can’t be filled, ever.
While I am so glad I met you through you posts, I am forever sad Kylie died, leaving you, her mom, and siblings forever changed. Margy

Peace to you Mark. July 30th will be Kelly’s day that she passed away. In the next few days we will place her memorial on her grave. I desire more than anything peace for us and for you and your family and all the others that have lost.

Mark we don’t win until no child/family goes through this…it rips my heart out to hear stories of kids like your daughter..my brother and sister-in-law are hyper vigilant waiting for it to rear it’s ugly head again.. you are never the same…one day at a time… will keep you in thought and prayer. Keep writing about your beautiful daughter as you share her with us.

My son was 2 when he passed away from cancer, actually respiratory failure caused by giving chemo while he had a RSV infection. I laid him to rest on my birthday. I completely agree with all your descriptions of what we feel as we go through the day to day life after. I don’t believe I have ever looked at his death certificate more than once, actually they got his SSN number wrong. The funeral home that many of my loved ones have been laid to rest asked me to come back in and pick up a corrected death certificate. I still haven’t…even two years later. However as brutal as that is nothing compares to having to go back to that hospital and request his autopsy report, reading it and finding out all the problems with your child that you could never have dreamed of because to us they are perfect. The chemo ravaged his body along with the infections and radiation. Knowing everything that was in that autopsy, the lack of true treatments and my sentiments of how everything panned out, I would NEVER allow another one of my children to ever go through western medicine for cancer again. I would actually prefer them to live a normal happy life until their own time comes and provide measures for the pain.

Mark, I don’t know you but I know the sweet woman who posted this on Facebook and I read it. I am so terribly sorry for your loss. I have and will continue to donate to curing childhood cancer. Every five years at work my company allows us to donate to a charity. I have another five year anniversary coming up in less than two years and I already know where it’s going. Please continue doing what you’re doing. It matters.

I will never forget opening my boy’s death certificates. It was the thing that solidified it all for me. Suddenly there it was in plain sight. Alex was gone. His too said cardio respiratory failure, rather than DIPG. So as far as the US government is concerned he is not a childhood cancer statistic. I fear that change is too far away. We will continue to lose our children until someone with real power has a child with cancer.

I know what the point of this article is and having attended the funeral of a 6 year girl with cancer recently, I support what you are saying 100%

This isn’t going to make you feel any better. This isn’t going to change anything, but I can explain why the cause of death is respiratory failure.

I know the answer, bc it is my job. I am one of the people who put the numbers on charts like your daughter’s that the state will use to fill out that line.

Most people who have cancer don’t actually die from the cancer. They die from complications of cancer. (You know this, I am sure) The little girl whose funeral we attended didn’t die from cancer. She died from respiratory failure, caused by the lung disease, caused by the radiation treatments to treat her cancer.

We buried my FIL 10 days ago. He had liver cancer, which metastasized to his lungs. He didn’t die of cancer either. His death certificate will likely say liver failure bc the cancer caused his liver to fail, but I was by his bed while he was actively dying and knowing what I know, he actually died of starvation and/or dehydration as he had not been able to keep anything down for a month and because he was at risk for aspiration, but also on hospice, he was given no fluid of any kind for 4 days.

What is printed on that death certificate is what actually caused them to breathe their last breath, as documented by a physician.

I am so very sorry for your loss. I, too, believe we need to do more to end childhood cancer….and cancer of all kinds for that matter.

Hi Mark. Sorry for your tremendous loss. Your faith is admirable. While our family doesn’t share your faith, we do share your hope for better funding for childhood cancer research. We also share a conviction that life is precious and not to be taken for granted. We received that horrid piece of paper ten years ago and I still can’t look at it without wanting to throw up. We still have our sweet daughter Althea’s ashes on a shelf.

After her death we were too crushed to do anything but focus on maintaining a semblance of normal life for our remaining child. As soon as we felt stable enough – we had another child. Four and a half years later he was diagnosed with cancer too. Immunotherapy research funded by St. Baldrick’s Foundation saved his life.

We’ve become advocates for childhood cancer research and our son Phineas has been serving as an ambassador for St. Baldrick’s this year. Both my husband and I have done interviews, given speeches and written blogs posts and letters on their behalf to support their mission. https://www.stbaldricks.org/blog/tag/phineas/

First I am sorry for your loss. I cannot believe you had to do it all over again. You certainly deserved a pass after that. I have heard of Phineas. I know St. Baldricks very well and have shaved twice and my wife and I were fortunate enough to attend an event in Las Vegas with them.

I am hopeful we can find a cure. Thanks for reading. Let me know if I can ever help you.